Seronegative Rheumatoid Arthritis

MoyaSkyeFox
MoyaSkyeFox Member Posts: 4
edited 22. Nov 2012, 18:15 in Young people's community
So, to be perfectly honest I really dont know where to begin or how to start. Ive been pretty down lately and feel like no one i know can relate on understand how im feeling, so heres my story and i just hope someone out there can relate, even if its just one person out of many just that slighest bit of understanding would help me so so much!

My name is Moya Skye Fox, im 23yrs of age but my pains started from when i was about 10 i think. Every so often i would get this pain in my knees, it was a blunt but throbbing pain that caused me great distress. I remember staying up and crying all night and mum having to sleep with me because i would be in so much pain. Everytime i went to the doctors they told me it was growing pains and i was imagining the pain i had. I knew this wasnt the case but nobody believed me from a young age how bad it was. to summarise throughout my whole child hood up until the age of 20 i must have been to the doctors over 100 times and been ignored everytime.

I was then diagnosed with Arthritis a couple of years ago now which was a shock! without being to dramtic when i found out i did think my life was over at one point, i thought wow im going to be a cripple and not be ablt to do all the things i wanted to in life. It got me really depressed actually (which didnt help the condition).I was only diagnosed when it spread from my knees to my hands. I was put on Sulphsalazine which had no effect on me what so ever. Moved on to steriod injections they helped a little then moved onto methotrexate! My problem is that i have seronegative rheumatoid arthritis. And yes people say oh if you have that kind your lucky but im really really not! its hard proving how much pain your in when it doesnt show up on a poxy bloodtest. I actually think people are rather ignorant to it. Im in pain most days, my hands and knees swell up sometimes i cant even walk because my knees feel buckled yet people say im lucky? i can go from a 1 on the pain scale to a 10 over night. in the winter my joints seize up i cant walk as quick as any1 else, and as silly as it sounds im very sensitive to air pressure. If theres a storm coming id be the one to tell you, i flare up when ever it rains :cry: . Anyway without going on to much i felt like i just needed to write this down somewhere and get my anger out about how ignorant people can be towards the different types. If any1 had read this thankyou for your time. x

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I've read it and with interest. Everyone on here has an arthritis story and that is yours. I'm a sero-negative but mine's PsA (psoriatic) and the joint damage from that has led to OA in my knees and ankles so I'm lucky, I have a creaky foot in both camps. :) I'm not a young person any more but I do empathise with the anger, fear and frustration that this disease can engender. We on here know what it's like so come and talk to us (air pressure affects loads of us on here), we get it, we understand it and we'll do our best to support you through it. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Kjc
    Kjc Member Posts: 4
    edited 30. Nov -1, 00:00
    Hello Moya Skye Fox, I have just read your story and I can really relate to it. I thought I'd share mine with you so you know you're not alone.

    Although I'm not as young as you (I'm 31 which is still fairly young) I have just recently been told I have a form of sero negative rheumatoid arthritis (sna). I have suffered with chronic pain in my sternum and clavicles for 11 years! I have flare ups that leave me crippled and unable to move my arms, shoulders and neck. At times I can't lift anything, not even a drink to my lips when it's at it's worst. I have two young children which makes things extremely difficult to cope with. Over the years I've seen numerous doctors who could tell me nothing and many people suggesting it's all in my head. Just like you my condition is affected by bad weather, even the rain. Finally and by chance, I recently saw a doctors who could see how swollen my steroclavivle joint was and even though my bloods were negative for rhuematism he recognised it to be sna.
    I am relieved to get a diagnosis after all these years, but I can't help but feel gutted about what this condition means for my future. I too am suffering with depression caused by years of pain, which really doesn't help the condition. I feel very angry, frustrated and I'm struggling to come to terms with the whole thing.
    Even though I'm sad to hear you are suffering like me, it's been helpful to share stories. Thank you Katy x
    K J C
  • stickywicket
    stickywicket Member Posts: 26,280
    edited 30. Nov -1, 00:00
    Hello Katy. That's a long time to go without a proper diagnosis. Thank heavens you finally found a doc who was on the ball. I presume you're now seeing a rheumatologist and have been put on some proper meds to control the disease. If so things should start to look up a bit soon. I did the 'two small children and rampant RA' thing many years ago and it's no fun. I think a lot on here find they need anti-depressants. If you post again on Living With Arthritis you'll find a lot more people see and answer though weekends tend to be a bit quiet on here.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Kjc
    Kjc Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi Stickywicket

    Thanks for your post. I'm currently under the care of a rheumatologist and I'm waiting for a mri scan. They won't give me any meds until they have hard evidence to support their diagnosis. So I have to wait 2 months. Meanwhile I'm in agony and on painkillers everyday. I have strong side effects to NSAIDs so can't take them. The only painkiller that's suits me is cocodamol but after taking them for a while they just don't seem to work so well. Think I'm going to try acupuncture.
    K J C
  • stickywicket
    stickywicket Member Posts: 26,280
    edited 30. Nov -1, 00:00
    That sounds tough – to have a diagnosis but no meds. Did he give a reason for this? Sometimes, in an ‘interim’ period, people are given a short course of steroids to tide them over. I have a love/hate relationship with steroids as they make me feel wonderfully painfree but, unfortunately, don’t tackle the disease itself so it’s false hope.

    People have different opinions about paindullers and some believe they work best if taken round the clock. However, like you, I find the more I take the less efficient they are and the more I need so I aim to take as few as possible. That way, when I really need them, they pack a punch.

    When you’ve taken NSAIDS have you also taken a stomach protector with them? Lansoprazole or omeprazole. These do help with any nausea and sickness. Plus they should always be taken with food.

    Acupuncture may help. I think it’s one of those ‘it depends’ treatments. It certainly won’t do any harm though.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Kjc
    Kjc Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi

    I agree with you about the painkillers, I try not to take them if necessary. I hate taking them, they leave me feeling so doped I find it difficult to function. Plus, for me, they don't work so well after some time.

    NSAIDs - yes I have tried them with lansoprazole but it wasn't my stomach that was the problem. I would get a mouthful of mouth ulcers (17 at one time!) and strange pains in my thighs. Weird I know. I had to fill out a report at the pharmacy to declare it.

    I've just had a really bad flare up, thought I was going to go insane, so I tried acupuncture. I have to say for me it has been a life saver. I went to the acupuncturist in agony and not being able to move my arms upwards. She put 5 pins in my ear and the results were instant. I could move again! She then lay me down and put needles in my forearms and lower legs and left me for a while listening to wind-chimey music. Later that day the pain did come back. However, the next day I felt a lot better and the day after that even more so.
    Now I'm mobile again I'm still weary not to jolt myself to cause another flare up because I know it will come again. She did say acupuncture is a pain reliever and I will have to go back for regular treatment (which is very expensive). So she suggested I would benefit from Chinese herbal medicine. I'm not quite sure. Do you have any knowledge of Chinese remedies? I might put another discussion out on the forum.
    K J C
  • stickywicket
    stickywicket Member Posts: 26,280
    edited 30. Nov -1, 00:00
    That sounds like a very nasty, and thankfully rare, reaction to NSAIDS.

    I'm glad acupuncture has helped. That, by contrast, seemed a happily dramatic reaction :)

    By all means start a thread on LWA about Chinese Medicine but I'd caution against it as I don't believe there are any controls on what goes into it and you could find it reacting with something you already take.

    You might also consider asking the helplines for their opinion on it.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran